TLDR: I died, came back, and now my life is not nor will it ever be the same.
I honestly have no legitimate method on how to approach this topic except to explain exactly how my year has been with regard to my health and its sudden drop into the pits of hell. To start, I found out in Fall 2023 that I needed an eventual aortic root replacement in effort to keep my heart from randomly popping on me one day, surely killing me. I elected to have the surgery sooner rather than later and set a surgery date for Jan 30th. I was supposed to have the heart surgery done that day, and recover in the hospital for about 8 days before being on a peaceful bedrest at home for about a month or so. So imagine my surprise finally waking up weeks later in the ICU… unable to speak, move, or… do anything but look around confused as to why I couldn’t do anything and why my fingers/toes were looking black as night.
Basically, though the heart surgery went “great,” I somehow ended up with pneumonia and RSV and it caused my right ventricle to fail while recovering. I had to be intubated, given a feeding tube through my stomach, and put on life support (everyone can go google ‘ECMO’ for more) as well as 24-hour dialysis to keep me alive… all while my parents just watched and waited for me to wake up. While in my little medically-induced coma, my parents/friends would play things to try and get me to hear it. This went on for a few weeks, I believe, before I remember truly waking up. During it all, I mainly remember just dreaming. But to be honest, a lot of the month of February was stolen from me (memory-wise) as all I really remember was a blue room, cold sheets (to bring down my constant fevers), and the alarms of medical equipment whenever my blood oxygen level got too low.
Being stationary for almost a month caused my muscles to atrophy. I lost about 50lbs (I was around 200lbs going in) including most of my muscle mass (to be honest, my mass and age is what kept me alive, as most people on ECMO don’t usually make it.) Being intubated meant I was unable to speak, and had to communicate in grunts and moans with the hospital staff/my parents. Finally, being on ECMO caused GREAT damage to my body, including irreparable damage to my hands (fingers) and feet (if you’re REALLY brave, google the effects of dry gangrene [warning though] and come back when you’re ready to continue.)
I spent the next two-ish months recovering from all of this. I had to learn how to walk again (as my body forgot how to stand/walk and I lost my previous ability to balance myself due to my messed up feet), had to learn to use utensils and tools again (like a fork/spoon, etc.), and had to learn how to breathe on my own again and swallow liquids/foods again (once the hole cut into my throat [intubation, remember?] was finally healed/closed.) I also required surgery on my hands and feet to remove the previously mentioned gangrene. It’s EXACTLY as it sounds without me having to say it (as I’m still coming to terms with it all and makes me depressed to this day.) I didn’t officially leave the hospital until the middle of April, depressed AF and honestly ready to call a spade a spade and just “clock out” on life at that point. Regardless, I still tried my best to recover and get back to my old ways… despite lacking the ability to do ANY of the things that I previously enjoyed (eg. video games, cooking, working out, etc.. It all felt like an impossibility at that point and made my depression worse.) I could not do anything without needing help from others in some form for QUITE a while. Also, even though I was finally out of the hospital after those 3 months.. my overall health continued to decline. My weight continued to go down (the lowest I got was like 140lbs) and new symptoms would pop up each day.
I was sadly still in and out of the ER due to elevated liver numbers, and I began to look even MORE like death than I did back in the previous hospital stint (Jan-Apr.) By May, It would turn out that ANOTHER result of being on ECMO (to keep me alive and save my life) was that my bile ducts were damaged beyond repair and put me into end stage liver failure (you can google the symptoms for that; I had them all.) I required an entire liver transplant if I were to make it through (again.) I would have to live day to day with these symptoms until this procedure was eventually done in mid-August. (For anyone medically-inclined, my MELD score was like 36 by the time I got put on the transplant list.) This required ANOTHER stay in the hospital to recover from the transplant. I had 45 staples in my stomach (I counted) to allow my stomach to heal back, post-transplant. At this point, I've added about ..847 new scars to my body. In any case, I was discharged after 10 days of recovering but I had to go back due to a pocket of blood inside me becoming infected and sending my temperature to around 104°. It required a plastic drainage tube to be surgically inserted into my side to get rid of the bad blood over the course of 2 weeks. Once this was removed, I didn’t finally start feeling somewhat better until maybe the end of Sept. Still VERY depressed throughout…
And here we are today, on Christmas Day, about 3 months-ish since that last hospital stay. I’ve finally started the journey of coming to terms with the person I am physically (hence my desire to even WRITE this lil essay to inform you all) and doing things I used to do previously like seeing friends (who haven’t seen me ALL year), cooking, gaming, and working out (machines mainly with low weight since I can’t really hold free weights properly anymore due to the hand surgery.) It’s still a very very long road and I don’t think I will ever find peace but the best I can do with my life is to live it.
With that said, I want to thank (and semi-apologize) to those who were there for me OR tried to be there for me this year. It was never my intent to shun anyone who genuinely tried to be there for me either. Given everything that happened, I didn’t recognize the person I saw in the mirror anymore and because of it, I did not want to be seen by any and everyone in such a sad state. I didn’t want to feel pity as I myself was still unable to look past what had happened (in order to keep me alive.) So, my apologies there.
I also want to thank those who donated to the GoFundMe, set up by my illustrious and wonderful shining star of a best friend. I’m sure some of you think I was just trying to randomly scam people out of money (😅) but those funds helped pay for NUMEROUS blood tests, surgeries, MRIs, cat-scans, hospital visits, two walkers, a wheelchair, medications, tools for the disabled, etc. The first hospital stay alone was like $500k (before insurance), so please know that I thank you guys with all my heart for helping out (and I apologize for writing this extended message a bit late.)
To be honest, there were many many other non-medical events in my life that ALSO helped to make 2024 the worst year of my life. Everything I knew about my life was no more, to be honest. Regardless, I wanted to take the time to discuss the big elephant in the room (my death and “rebirth”) as I will eventually want to truly move onward (and also take off these gloves I’ve been wearing to hide my hands.) Though now I’ll always fear judgement & a new type of discrimination from others (given the change in my appearance), I will have to understand that it’s just life for me now. All I can do is look forward.
With all that said, congrats if you made it this far. And thank you for taking the time to read all of this. This was really really really difficult for me to write and it’s still only half of the story. In the very least, know that every day seems to be getting a little better for me. One step at a time. And even though I WILL be complaining, crying, yelling, and making the most depressing/macabre of jokes about my overall situation… At least I’m still here to do it. 👑
With Love,
-Tristan (the boy who lived..)